New doctor wants to treat empirically for Lyme, good idea?

[drob31]

Standard tests are only 30%, and IgeneX is only 90% accurate. So a negative lyme test is meaningless.

Does this mean everyone keeps testing until it's positive? At some point you empirically treat it?

He wants me to start with Doxycycline or Minocycline.

 

[Esther12]

Sounds bad to me.

Standard tests are only 30%, and IgeneX is only 90% accurate. So a negative lyme test is meaningless.

That claim is just not supported by the evidence. Personally, I'd leave this doctor. Good luck.

 

[drob31]

Sounds bad to me.



That claim is just not supported by the evidence. Personally, I'd leave this doctor. Good luck.

I can leave them. What does the evidence suggest?

 

[Esther12]

I can leave them. What does the evidence suggest?

There's no evidence to suggest that any alternative testing is more accurate and reliable than mainstream testing, and there was an old double-blind study of some alternative testing IgeneX was providing that found it to be unreliable.

There are so many people out there claiming to have effective treatment for you to spend money on, that it really is worth only putting your time and money into things that have a good evidence base imo.

Unfortunately, that rules out almost everything for CFS.

There are lots of people who get accurate and meaningful exclusionary diagnoses, but that can be a lot of work and often requires some dumb luck.

Personally, I think that money donated to good quality research is more useful than money spent on alternative treatments. Wish I had a quick and easy solution for you.

 

[drob31]

There's no evidence to suggest that any alternative testing is more accurate and reliable than mainstream testing, and there was an old double-blind study of some alternative testing IgeneX was providing that found it to be unreliable.

There are so many people out there claiming to have effective treatment for you to spend money on, that it really is worth only putting your time and money into things that have a good evidence base imo.

Unfortunately, that rules out almost everything for CFS.

There are lots of people who get accurate and meaningful exclusionary diagnoses, but that can be a lot of work and often requires some dumb luck.

Personally, I think that money donated to good quality research is more useful than money spent on alternative treatments. Wish I had a quick and easy solution for you.

Thanks for the feedback. This is why I'm thinking that empirical treatments are more realistic. Assume something is true, treat for it, it doesn't work, try something else.

 

[Never Give Up]

Standard tests are only 30%, and IgeneX is only 90% accurate. So a negative lyme test is meaningless.

Does this mean everyone keeps testing until it's positive? At some point you empirically treat it?

He wants me to start with Doxycycline or Minocycline.

My son was desperate and in the same boat. He did 73 days of Doxcycline and Rifampin, it made him much, much, much, much, much, much, much worse. Don't do it!

 

[Esther12]

Thanks for the feedback. This is why I'm thinking that empirical treatments are more realistic. Assume something is true, treat for it, it doesn't work, try something else.

'empirical treatments' sounds like it might be the same as 'try random stuff and see what happens'.

When there's so much uncertainty and so many possible assumptions that could be made, just assuming one thing or other is true is very likely to be misleading.

There is a potential cost in terms of money, time, effort and health with all possible treatments, and if the likely benefit does not outweigh the likely cost, it will just make your life worse.

 

[Ema]

There's no evidence to suggest that any alternative testing is more accurate and reliable than mainstream testing,

This is untrue and has been refuted time and time again on multiple threads.

There are many reasons that IgeneX Western blot testing is more reliable and accurate than other labs including using more strains of Borrelia and better testing materials in their analysis. Their interpretation is also superior because they identify weak bands rather than just simply reporting them as negative. These facts alone make IgeneX superior to Labcorp et al.

IgeneX is not an "alternative" lab. It is a fully CLIA certified, Medicare reimbursable lab providing standard Western blot testing.

Lyme remains a clinical diagnosis and testing is but one piece of the picture. If there is a high degree of suspicion of Lyme, treating only makes sense. Treating for years and years without seeing any improvement is obviously a different story...you have to use common sense too.

 

[drob31]

This is untrue and has been refuted time and time again on multiple threads.

There are many reasons that IgeneX Western blot testing is more reliable and accurate than other labs including using more strains of Borrelia and better testing materials in their analysis. Their interpretation is also superior because they identify weak bands rather than just simply reporting them as negative. These facts alone make IgeneX superior to Labcorp et al.

IgeneX is not an "alternative" lab. It is a fully CLIA certified, Medicare reimbursable lab providing standard Western blot testing.

Lyme remains a clinical diagnosis and testing is but one piece of the picture. If there is a high degree of suspicion of Lyme, treating only makes sense. Treating for years and years without seeing any improvement is obviously a different story...you have to use common sense too.

So you think it may be wise to try to treat for it Ema? It would be starting with Minocycline, which doesn't look like it has too many side effects.

 

[Ema]

My son was desperate and in the same boat. He did 73 days of Doxcycline and Rifampin, it made him much, much, much, much, much, much, much worse. Don't do it!

Rifampin is a CYP 3A4 inducer and as such is VERY hard on the adrenals. If one had weak adrenal function prior to treatment, it could easily prompt an adrenal crisis.

This happened to a friend of mine. No fault of treating for Lyme (which still needed to be done) but a sign that the HPA axis dysregulation also had to be addressed before healing could occur. After this debacle, she went on to get a PhD and now teaches at a medical school.

 

[Ema]

So you think it may be wise to try to treat for it Ema? It would be starting with Minocycline, which doesn't look like it has too many side effects.

If there is a strong clinical suspicion of Lyme along with the typical supporting labwork, yes, I would consider a trial.

Minocycline works in many ways as an immune modulator and antiinflammatory agent as well as an antimicrobial. It also crosses the BBB well.

I think it is a fine choice for Lyme but I wouldn't use anything as a stand alone treatment. I think it's important to use a mixture of antibiotics so as not to induce the cystic forms. I would ask your LLMD about combining with azithromycin and/or Flagyl/Tindamax too.

 

[drob31]

If there is a strong clinical suspicion of Lyme along with the typical supporting labwork, yes, I would consider a trial.

Minocycline works in many ways as an immune modulator and antiinflammatory agent as well as an antimicrobial. It also crosses the BBB well.

I think it is a fine choice for Lyme but I wouldn't use anything as a stand alone treatment. I think it's important to use a mixture of antibiotics so as not to induce the cystic forms. I would ask your LLMD about combining with azithromycin and/or Flagyl/Tindamax too.

There isn't the supporting labwork yet. CD 57 is under 100, but c4a is low.

 

[Esther12]

This is untrue and has been refuted time and time again on multiple threads.

It hasn't been refuted once.

There are many reasons that IgeneX Western blot testing is more reliable and accurate than other labs including using more strains of Borrelia and better testing materials in their analysis. Their interpretation is also superior because they identify weak bands rather than just simply reporting them as negative. These facts alone make IgeneX superior to Labcorp et al.

What evidence do you have that any of that leads to a more accurate or reliable test?

 

[Ema]

It hasn't been refuted once.

What evidence do you have that any of that leads to a more accurate or reliable test?

Common sense tells us that more strains, better testing materials and more sensitive interpretation leads to a better test. This is proven by the number of positives IgeneX finds that are missed by other labs.

 

[Esther12]

Common sense tells us that more strains, better testing materials and more sensitive interpretation leads to a better test. This is proven by the number of positives IgeneX finds that are missed by other labs.

If the materials are really 'better' and the interpretation more sensitive, then this should be shown in blinded testing. 'Common sense' is not a valuable substitute for evidence here, especially when evidence could be so easily collected.

The only example I can find of IgeneX's testing being assessed under blinded conditions and coming to different results than 'mainstream' testing is one which showed the test IgeneX was selling was unreliable: http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract

 

[maddietod]

I fell down the rabbit hold of Lyme testing, and finally gave up on understanding my conflicting results. I don't have Lyme-specific neurological symptoms, and antibiotics for other things, like sinus infections, never brought temporary gains.

I found this just now from an October 2013 article in the Boston globe:

The CDC’s method is highly specific but not that sensitive, meaning it probably misses significant numbers of people sick with Lyme, according to Lyme activists. In contrast, government and academic scientists contend that the IGeneX method is highly sensitive but not adequately specific, meaning it probably returns positive readings for many people without Lyme.

 

[duncan]

There is not a single Lyme diagnostic that I know of that isn't rife with issues.

At least IgeneX is good enough to test with TWO strains, instead of just one.

Anybody who is that keen about testing for TBDs needs to take the bull by the horn and learn what the different bands indicate. Once they do that, they need to get a Western Blot done. Also a C6.

Getting a WB, though, might be denied without first having a positive ELISA. I'm not sure if you can get a WB thru IgeneX without a positive ELISA, but my guess would be you can - which might be another reason to go to IgeneX. But double check to see if u can bypass the ELISA with IgeneX. Maybe Ema can verify if you can avoid the ELISA with them.

A problem with IgeneX is some dogmatic clinicians won't accept its findings. I suspect many people who turn to IgeneX are ahead of the learning curve, and are doing it for themselves, more than their doctors.

 

[Sushi]

My son was desperate and in the same boat. He did 73 days of Doxcycline and Rifampin, it made him much, much, much, much, much, much, much worse. Don't do it!

I don't know if this fits your son, but Rifampin can lower cortisol. I took it for a long time (it had some good effects I think) but when I tested cortisol, it was sort of flat-lined.

 

[Daffodil]

@drob31 .... why not get the LTT ELISPOT for Borrelia? It does not rely on antibody production or PCR. it is a test offered by ARMIN Labs.

even my doctor (virology), who knows very little about Lyme or CFS, accepted the ELISPOT

 

[Valentijn]

There's no evidence to suggest that any alternative testing is more accurate and reliable than mainstream testing, and there was an old double-blind study of some alternative testing IgeneX was providing that found it to be unreliable.

There's published research showing the Elispot LTT to have a 10% false negative rate and a false positive rate on par with the mainstream tests (1-2%), using samples known to be positive or negative based on serology. I think that qualifies as "evidence", and it has been discussed on this forum repeatedly.